Falling into the pit

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I have had ME for a long time, have been through the denial, anger, desperation, GRIEF, and almost accept.. But sudenly, yesterday I fell into the pit again. I just cannot take it anymore - enough!! I WANT MY LIFE BACK!

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  • Posted

    It's a difficult condition for sure. Which symptoms are bothering you the most?

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    • Posted

      Tried to answer, but system glitched, I think. The usual, headache (makes thinking hard) stomachache (steals more energy than normally) and this feeling that gravity is VERY strong, trouble getting around, in and out of bed etc. Mostly I am just angry, desperate, blackish depression.
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  • Posted

    Poor you, being a sufferer for many years i well know, i have days when i think it may be going then only to feel like im going down with full blown flu. You do grieve for old you, the one you took for granted.  Im fortunate that now all my kids have grown up and left home so no young ones to look after, i got this though when my last son was still at school and in the end i could no long walk along the road to take him or meet him from school. Luckily my hubby was around and could drive to do this for me. Im ok ish now as long as i dont do much, housework never gets done properly, and i have to go everywhere by car with a little walk , no more than 1 hr or i get the flu like symptoms back again. on a good day.   Yes id like my life back, back i see so many worse off than me. Some do even get over M.E.  in the end. Cutting out sugar helps a lot. It puts an enormous strain on the immune system.   How old are you?  

    Sue 

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    • Posted

      My housework does not get done either, it is a source of constant bad conscience - completely irrational, I know, and most days I shake it off, right now I just can't. I am 67 - a good age :-). Sometimes. Otherwise.

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  • Posted

    Been there, done that.  It is rotten, isn't it?  However, eventually that stabiity you reached will return.  I think ME teaches patience like nothing else I've ever experienced.  

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    • Posted

      Yes I sure hope so. You have a very good point about patience, I have learned some and it was very difficult, and only by having ME. In this situation, you learn it or do not make, I think.
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  • Posted

    I know how you feel, Solsikke! I've experienced the same feelings of denial, anger, deperation, grief, and acceptance, and at times, I feel a sense of hopelessness. The hopelessness strikes when I'm having a really bad day only because I had too much fun the previous day and over did it! It is so sad that I miss out on so many fun times with friends and family because of this debilitating condition that cannot be explained and is not understood my so many! I wish I could have my life back, too!

    All we can be happy for is those moments and days when we feel relattively energetic and healthy. Feel you pain, KPD

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    • Posted

      Missing out with friends and family, jobs, all the things you used to do..

      There is an action day regarding ME called MillionsMissing 12 May in Europe in many European Cities, where people have sent in their shoes and a card saying in few words what they miss most. The empty shoes representing people who have, in a manner of speaking, dropped out of society.

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    • Posted

      Actually, these are the cities:

      AUSTRALIA

      Sydney, Australia

      EUROPE

      Copenhagen, Denmark

      Reykjavik, Iceland

      Dublin, Ireland

      Zwolle, Netherlands

      Oslo, Norway 

      Helsingborg, Sweden

      UNITED KINGDOM

      London, UK

      Edinburgh, UK

      Birmingham, UK

      Newry, UK

      Isle of Man, UK 

      UNITED STATES

      Sacramento, CA

      VIRTUAL

      Australia

      Belgium

      Canada

      Finland

      Germany

      Poland

      South Africa

      Spain

      Sweden

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  • Posted

    Thanks for the information, Solsikke. You guys seem much more progressive in Europe and more knowledgeable about CFS/ME.  I'm in the US, and we have very limited resources here. 

    I've never even met someone in person who has CFS/ME. I guess most people drop out of sight and isolate themselves as I did when I first was diagnosed. Since then, I've tried very hard to function as much as possible. Working part-time has been a challenge for me but there are days that I feel like I'm at least doing something to distract myself from this condition that is so poorly understood by so many. 

    I do not have much hope for a cure in my lifetime, unfortunately. I just try to take the best care of my body and mind and try to appreciate the moments when I feel better. The older that I get, the harder that this gets, and it feels as thought I'm having more bad days than good ones. My husband says I've always said that.

    Thanks again for sharing your story. KPD

     

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    • Posted

      We are definitly not more progressive in Europe. At least not in Denmark and England, which are the two countries I know about. Here still the discussion about whether ME is a mental problem still rages, in spite of all the research results, although I think that the tide is very slowly turning. The actions etc come from organisations concerning ME.

      I think we do not isolate ourselves so much as we become isolated, because it is so difficult to find energy to go out, often it is spent before you even get there, at least that has been my experience. Also because our lives are so different, people talk about jobs, sport, what goes on, and many of us have a very different daily life and our failures and victuries are so comepletely different that it is hard to talk, sometimes.

      I do not know what your age is, KPD, but I am 67, and I think I have a hope of a cure in my lifetime, or at least a clinical marker to end the debate about whether it is physical or not, and also, I think, some relief of symptoms which is enough for me. I just want more energy.

      I know just about how hard it can be to have hope, I am floundering around at the moment as I haven't been for years, but even I put my trust in all these new results, not least the Austratian ones. I think it realistic to have hope here. If you can, look it up, you'll see. Search on Emerge and Australia, we cannot post links  here.

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    • Posted

      Hi everyone! I am so sorry for everyone who suffers from this. I sadly know how it feels. I too want my life back. It is taking not only my life but also my daughter's life as I am a single mum and cannot do anything for her. And it may never change...

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    • Posted

      Hi Solskikke,

      I'm 56 years old and have had CFS since I was about 30 years old. I actually had a child while ill and the prenancy made my condition even worse. While my daughter was very young, I managed to have some really good years. Since I turned 50, I've struggled more with energy probably due to hormone changes and sleeping patterns. Have your symptoms fluctuated throughout the years? 

      I do hope they at least find a way to diagnose this illness in my lifetime. My daughter who is 22 also seems to have a mild form of CFS. She is getting ready to graduate from college and has been attending full time. However, she takes naps in between classes and avoids social situations becaue she is always tired. I worry more about her than myself these days. I can't even imagine how hard it would have been at such a young age to have NO or very little energy. 

      Thanks for the info on Emerge and Australia. I'll have to look it up. KPD

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    • Posted

      Hi Natalie,

      I know what you mean about worrying about your daughter. I remember feeling bad when I couldn't keep up with all the things my daughter wanted to do when she was very young. She was full of energy. When she turned 16, she came down with a very bad flu and never seemed to gain back the energy that she once had. I believe she has a mild form of CFS. She has mangaed to get herself through college but takes several cat naps during the day. She also avoids many social situations becasue she is too exhausted to push herself during the evenings. 

      Natalie, try not to be too hard on yourslelf. Is your daughter old enough to understand what you have and how you feel? KPD

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    • Posted

      Hi KPD

      She is 5.5. And understands too much I think. She is very worried because I am unwell and her life is upside down. She had a full of energy mum who would take her to places and play with her and now she is worried that I will never be healthy again. And she is scared she will lose me, as now she is asking a lot if people get ill and then go on a cloud forever... luckilly my mum moved in and looks after us but it is heartbreaking seeing what my child is through becauso of this thing.

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    • Posted

      Oh Natalie, My heart goes out to you and your daughter. I would try everything to reassure her that you will be fine and that this condition just drains your energy.

      Do you mind me asking how bad your symptoms are and when this started? Are you bedridden or are you able to get around some? If so, I would try to find activities you can do with her that do not drain your energy.

      As I mentioned, my symptoms fluctuate; I have better and worse days and periods. The difficult part for me is not knowing...so unpredictable, so it makes it hard to plan ahead.

      So glad to hear that you have your own mom to help out. 

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    • Posted

      It started after tonsillitis, tonsillotis cleared, left me knocked for six. The GP diagnosed mononucleosis, then postviral infection. It will be 3 months soon... so little in comparison to others, feels like eternity to me. As the fatigue doesn't improve, actually got worse, now I was told it is start of CFS.

      I still have sore spleen, sore glands, headaches, struggle very much in the morning. Now I think I am also depressed because of this all. I am in bed most of the day. I am foricing myself to go out in the evening for 20-30 minutes to walk but now I don't even derive any pleasure from it as my legs are weak, i am dizzy, light headrd and I just feel like i would faint...

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    • Posted

      Hi Natalie,

      It sounds like you have been tested for everthing. Since you are at the begining stages, you should have hope that you mayimprove. Be sure to pace yourself and get plenty of rest. Are you sleeping well? I know when I'm exhausted, I often have a hard time falling asleep. A tricyclic antidepressant called Doxepin has been helpful for me; it promotes REM sleep. An anti-anxiety medication (athough addicting) is also helpful because it helps turn off the thoughts in the brain so you can really rest. Getting the proper sleep and rest is critical for healing. If you are not sleeping, please be sure to mention this to your doctor.

      I think that walking a few minutes is day is probably helping, even though it doesn't feel like it. I often try to push myslef just a bit, and then end up feeling a little better later in the day-not always, though. It just depends on how I'm feeling that day.

      I can understand how you are feeling depressed. I remember feeling like my life had been taken from me and I just couldn't understand how there was NO explanation for it. It might do you some good to seek professional help. I did. That helped me a lot, becasue often therapists and psychiatrists have a better understanding of what we are going through. 

      Also, since you said you had mono, have you been tested for Ebstein Bar or Herpes 6 virus? Some people benefit from anti-viral meds. Something else I would bring up to the doctor. KPD

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